Alicia: 50-Year Love Story Resumes
Alicia 77, from Orlando, Florida has always been a strong woman — a leader both at home and in her community. She worked hard and raised four children in the Dominican Republic, Puerto Rico, Mexico and eventually the United States, and made sure they each received a college education. She's devoted to her church, her community and her husband of more than 50 years.
But all that was almost taken away from her, when starting at age 69, symptoms including difficulty walking, incontinence and dementia, gradually robbed her of her mind and body over the next six years. Some thought her age was catching up on her and one doctor even prescribed an Alzheimer's drug, which did nothing to alleviate her symptoms. Alicia had normal pressure hydrocephalus (NPH) a little-known neurological condition that affects about 375,000 people in the U.S. NPH is sometimes confused with other conditions including Alzheimer's, other dementias or Parkinson's because the symptoms are so similar.1
At times, family members would visit Alicia and say that although she was physically present, she was mentally and emotionally distant and unresponsive to what was going on around her. They watched as she went from walking normally to walking like her feet were stuck to the floor. She later had to use a walker and eventually a wheelchair to get around.
"My wife was always fiercely independent and resourceful. So when she didn't even recognize her surroundings, it made no sense to me," said Nildo, 81. "She couldn't even recognize her own bedroom and we've been living in the same house for 25 years. It was heartbreaking. She's the love of my life and I saw a little piece of her go every day."
In 2009 things changed after Alicia was referred to a neurosurgeon by her diabetes doctor who noticed she was behaving in a way that suggested a neurological problem. Tests revealed Alicia had NPH and could benefit from treatment with a CODMAN® HAKIM® Programmable Shunt.
In the procedure, a shunt, a thin, tube-like device, is implanted underneath the scalp where it drains excess fluid from the head to the abdomen where it is absorbed safely into the bloodstream. After implantation, the shunt settings may need to be adjusted periodically because removing too much or too little fluid can be problematic. The newer programmable shunt technology allows doctors to painlessly and quickly adjust the settings using a magnetic device held over where the shunt was placed. In the past, changing a shunt setting required further surgery.
"In less than two weeks I could walk and think clearly again," said Alicia. "Every day, I feel like I am reclaiming pieces of who I was before the NPH was treated. All I have is gratitude—for my doctors, my husband and my family who all helped me get to where I am today."
Since surgery, Alicia's going to church, playing the piano and doting on her eight grandchildren. She's no longer in a wheelchair and her incontinence has improved. She's reading, playing cards and enjoying her new Apple iPad™. She and Nildo are also traveling again inside and outside the country.
1 Hydrocephalus Association
While most experts say that approximately 375,000 people have NPH, estimates have ranged from about 200,000 to 750,000 cases of NPH. Hospital discharge data shows that only about 11,500 cases a year are currently diagnosed and treated with surgical implantation of a shunt. Since NPH is often mistaken for other conditions, most cases of NPH go unreported and many are left untreated. Only a specialist can properly diagnose NPH. Surgery is not for everyone. There are potential risks and complications; recovery may take time.DSUS/COD/1014/0194